My husband and I are the family caregivers for our younger daughter who has lived with schizophrenia for over 20 years. She lives with significant disabilities that are common in schizophrenia and that make the tasks of daily living very difficult. The biggest factor in the widespread disability of people with schizophrenia are cognitive losses; these include difficulty with concentration, sequencing, judgment, short term and working memory, problem solving, and social skills.
I never knew that this category of family caregiving even existed. We have no public mental illness literacy programs so impacted families and the wider public have a poor or even inaccurate understanding of disorders like this; this lack of basic knowledge can lead to delays in accessing and maintaining appropriate treatment, and these delays can lead to worse outcomes. This lack of information also leaves families unprepared for the intensive family support that may be needed on an ongoing basis.
My ignorance about mental illness made adjusting to our daughter’s illness much more difficult for me. When our daughter had her first psychotic episode 22 years ago, I was shocked. I eventually learned that our daughter had actually had prodromal symptoms of schizophrenia for several years. School had become much more difficult; she had begun losing things, and she had developed a strange new gait as she became less physically coordinated. It never occurred to me that these were early signs of an illness that would forever alter our lives.
I was fortunate that as a secondary school teacher, I was able to take various unpaid leaves of absences and eventually arrange a part time position. We were also fortunate that my husband, Peter Seixas, a professor at UBC, had a good job that allowed us to hire people to provide many kinds of additional help for our daughter. This included tutors and recreation specialists. It also included the ability to hire someone to stay in our home for a week with our daughter when, after several years, we took a much needed trip away.
I gradually realized that certain kinds of choices made me feel much less helpless. These included learning all I could about schizophrenia and the best treatments. This led to volunteering for and initiating many educational opportunities for other families. When I learned that 1 in 100 people develop schizophrenia, I kept looking for some kind of article or book that described how other families learned to manage the daunting challenges we faced. I found these in the US, but couldn’t locate any about the Canadian experience. I finally wrote a memoir, After Her Brain Broke, Helping My Daughter Recover Her Sanity, about our experiences. In it, I discussed mistakes we’d made early on when looking for help for our daughter; responses to my book let me discover how many other families had made similar kinds of mistakes.
We gradually learned about the kinds of help that work best for our daughter. For someone with a very severe disorder, she still has enjoyed many years of stability. However, I fear for her future when we are no longer around to supply the many kinds of supports that she needs.
A major fear in the near future is that the BC Mental Health Act will cease to protect people like her. There is a well-financed and highly energized attack on this legislation that would stop access to involuntary treatment. Many people with psychotic disorders have anosognosia, a brain based inability to understand that they are ill; this is the reason they refuse medical help. Without the existing protections in the Mental Health Act, my daughter and many of her friends who live with schizophrenia would have joined the growing number of people who are left trapped in psychosis; these people become homeless, victimized, addicted and, in large numbers, incarcerated.
There are numerous ways that mental health systems across Canada fail people with severe mental illnesses and fail the families upon whom they often rely. I discuss some of these systemic problems and discuss possible solutions in this article, “Being the Mother of Someone with Schizophrenia.”
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Susan Inman is a retired Vancouver secondary school teacher. With her daughter’s support, she wrote a book about the first ten years of her illness. The book, After Her Brain Broke: Helping My Daughter Recover Her Sanity, has been recommended by NAMI and EUFAMI which are the largest organizations supporting families coping with mental illnesses. Susan has written for numerous publications including The Tyee, Huffington Post Canada, CMHA BC’s Vision, and The Province.
Editor’s Note: The views expressed in each our Caregiver Stories are the author’s own, and do not necessarily represent those of FCBC.